Wednesday, December 31, 2008

As for me and my house, this News Year's Eve day we will be renting a movie for Mama and Vati to enjoy tonight, getting Jay a temporary membership at the Y (he's jealous of all my bad yoga moves), and shopping for laminate flooring. I might even enjoy some fruit of the vine tonight. Whatever happens, I assure that we will all be in bed before midnight.

Hope you have a wonderful, safe evening and a new year filled with joy!

Monday, December 22, 2008

After a not-so-smooth morning at home, Joshua, Clare, and I headed out to Target for some last-minute shopping. We were listening to Vaughan Williams' Hodie. Joshua had some difficulty understanding the words, so I was telling him what the vocalist was singing: "But the angel said to them, 'Do not be afraid, for I bring you good tidings of great joy that will be for all people...'" We got to the part about finding the baby wrapped in swaddling cloths and Joshua was able to correctly identify Jesus' location as a manger.

"Mama," he said, "Was Jesus a boy?"

"Yes, he was a boy," I said.

"Why, Mama?"

"Well," I said, "the Israelites were waiting for a Messiah, and they believed that Messiah would be a man. So Jesus was a boy." I was so stinkin' satisfied with myself I almost ran off the road.

"Mama?" Joshua asked. I was ready for anything, any follow-up question he could throw at me.

Friday, December 19, 2008

First of all, Jay and I need to say a huge thank you to everyone who has sent us words of encouragement and let us know that you are thinking about us during this not-so-easy time. It has meant so much to us to know that we have so much support and so many people praying for us.

Second, we need to give mad props to my parents for being troopers on our behalf today. This day went as smoothly as it could have possibly gone, and that would have never happened if my mom and dad (and stepdad) hadn't come through for us big. My dad served as primary chauffeur and waiting room sitter from 9:30 this morning until 4:00 this afternoon, picking up Jay, taking him to the clinic, and waiting, and waiting, and waiting. My mom and stepdad served as babysitters on steroids, entertaining our little tyrants all day long. The biggest miracle of the day was that Clare didn't completely freak out when she woke up from her afternoon nap to find that I wasn't home. Instead she played happily all afternoon with my mom. Whoa.

On to the procedure. Jay first had a CT scan this morning that, as far as we know, showed nothing. That's good.

The really good news, however, is that the surgeon was able to do exactly what he wanted to do. He was able to get a guidewire all the way through the common bile duct and expand the entire length of it to roughly 4 mm (that's the size of a normal common bile duct) using a balloon. He didn't use a stent because, as he explained, bacteria can colonize around the stent if bile gets backed up around it. This can cause an infection. So, no stent. The surgeon was really positive. He was obviously excited that the procedure had worked and took great pleasure in telling me all about it. I was happy to oblige. He said that he had seen great results with the procedure in the past and that in some cases had seen dramatic, long-term improvements (sometimes even for years) from it. The dose of reality he injected was that this procedure might not actually improve Jay's condition at all. If that's the case, we'll know that the jaundice was caused by general liver damage instead of a backup of bile due to the stricturing of the common bile duct. The surgeon said that, if we see results, it could take up to two weeks before we notice a change in color.

Then I talked to the doctor. It was the first time he'd actually seen the inside of Jay's liver, so he was pretty realistic about things. He reminded us of what he had said to Jay previously, which is that Jay's liver functioning is still quite good, but that the liver itself looks pretty torn up. And it does. The films I saw looked fairly similar to the films I saw upon diagnosis eight years ago. The doctor wants Jay to have bloodwork done in about six weeks, here in Jackson, and then wants to have a face-to-face with Jay after that to talk about what comes next.

So the summary is that the procedure was successful, but we will have to wait and see whether or not it has the desired effect. We'll know when we see if Jay's color changes and when we see results of the blood tests in a little over a month.

I was telling my friend Terri the other day that the most difficult thing about this for me is that it feels like a constant waiting game. My hope is that we learn something definitive (and definitively good) in the next few weeks and that we can get off of this pincushion that we seem to be sitting on.

Thank you again for all of your support. You can't know what it means for us to know that we have so many people rooting for us. Bless you.

Monday, December 15, 2008

Is my kid going to be traumatized when he realizes there does not yet exist a picture of him with Santa Claus? Because he's never had his pic made with the old guy. The last two Christmases he's been scared to death by the old man, and this year it just hadn't occurred to me to do it. In fact, we've kind of avoided the whole idea of Santa Claus. Joshua hasn't asked; therefore, it's been a moot point. And we've been reluctant to introduce the idea of Santa Claus because bringing it up ourselves seems somewhat deceptive: "Hey Joshua! A big man in a red suit is going to come down your chimney and bring you presents!" The last time I checked, that was a complete lie, and I'm not sure I like the idea of it.

One of his friends at the children's gym asked him if he'd been to ask Santa Claus for presents and he just stared at her blankly. I shook my head 'no' behind him and she didn't press the issue, but it made me wonder if I'm making him miss out on something altogether. Maybe he'll be interested in Santa further down the line and we can introduce a little of the magic without being completely deceptive. I was reading some posts on one of my favorite sites where many of the mothers talked about how magical it was for them to believe in Santa Claus, and about how wonderful it is to see their own children believe in Santa. Are my kids missing out?

We were going to celebrate St. Nicholas Day this year, but that didn't happen since St. Nicholas Day is December 6 and I was still reeling from Thanksgiving. Maybe we'll try again next year.

What do you think? Will my child be scarred for life because he doesn't know about Santa? Are we missing out?

Friday, December 12, 2008

To look at my children's toy and book collections, you'd never know I was a pastor. To hang out at our table at dinnertime, you'd never know I was a pastor. Joshua never said a blessing until he started singing the blessing at his school's snacktime, and we have nary a children's bible in the house save the one that my dad gave him. It was a book that my dad used to read to his mother when she was in her last stages of life and needed a distraction that would keep her from repeating herself and making random comments, an effect of her Alzheimer's disease. It's still a little old for Joshua's comprehension and it doesn't yet hold his attention.

To be quite honest, we haven't talked much about God in our house. Joshua went to see his friend Olivia's little sister be baptized. In the weeks leading up to the event, I told Joshua that the act of baptism included putting water on Baby Emma's head and telling her that God loved her. We rehearsed the same scenario prior to Clare's baptism as well. But that's as far as the God discussion has gone in our house.

I think my hesitation comes from my desire to give Joshua thoughtful, intentional answers to the questions that will inevitably arise when we start talking about God. I want to avoid giving him the anwers that portray God as the old man in the sky who watches us and plans our lives for us...a divine Santa Claus if you will (which is another whole post in and of itself). I want Joshua to understand that God is love, but I don't want that explanation to come across all squishy and noncomittal. I want him to learn to connect with God, but I don't want him to think that prayer is an opportunity to ask some entity "way out there" for all the things that we want. And how do I teach a child to give thanks to that which is so far removed that we can't see it? I can barely get him to say thank you to people right next to him give him things So I've gone the route of not saying much at all. Maybe that's a mistake. I don't know.

One of the great joys this Advent has been opening his advent calendar with him every day. His calendar is composed of twenty-five miniature books that start with Isaiah's prophecies and end with the birth of Jesus. It's apparent that he's not quite getting everything, but he perked right up when we talked about John the Baptist. We spent yesterday morning looking at the pictures of Joshua's baptism and talking about why John baptized in the river and why we baptize in the church building. It was something that he could connect with, and that made the conversation easier.

We're also giving him a more age-appropriate bible storybook for Christmas. I'm much more comfortable talking about the story of Jesus in the context of the whole Bible story...God as Creator, God who chooses to love us before we choose to love God, God who loved us enough to become one of us, God whose love for us inspires poems and songs, God who expects us to treat people the way we would like to be treated. I'm hoping the book will give us an opening to talk about all of these things in a meaningful way that doesn't begin and end with an anthropomorphized God who's happy when we do the right thing and mad when we don't. Because I love to talk theology. And I refuse to do it poorly when my kid is involved.

Monday, December 08, 2008

Last August my friend Andrea came over to bring me her collection of Christian Century magazines since I was to be taking on the role of Christian Education chair at my church. We started talking about church life in general, and somehow the subject of the annual women's retreat came up.

"Oh, I totally intend to go this year. I really wanted to go last year, but it was too hard with Clare being so young. I can't wait to go this time!" I said.

"Well good," said Andrea, "because I've met with the committee and we were hoping you would be our retreat leader this year. This subject is the Holy Spirit." And she proceeded to give me the details.

Somewhere in the middle of the detail-giving, I remembered that last year's retreat leader was a well-known and highly-respected professor from Lambuth. In fact, she was one of my cousin's favorite professors, which is saying a lot. The boy is picky.

Last August, is seemed like the first weekend in February was a million years away. But during the first week of December, February seems to be right around the corner. Don't get me wrong, I've thought about it. I've been to planning meetings. I even grunted a few times when we were choosing the guiding scripture for the weekend. (That particular meeting was during Rush at Lambuth, when I was functioning on ridiculously little sleep). But I haven't yet thrown myself into the whole business.

This weekend, however, I decided that it was time to get serious, to start outlining some of my thoughts. So I bought a pretty spiral-bound notebook at Wal-Mart, hoping that the endless pieces of blank paper would inspire me to get going. So far I haven't written anything, but I'm sure I will.

Tuesday, December 02, 2008

I feel like I've been marking time here on the old blog for the past few weeks, trying to fill in the gaps with any old thing, just so there's something here. But there's a lot happening under the surface, and I finally feel like it's OK to share.

Some of you will remember that Jay was diagnosed with a liver disease called Primary Sclerosing Cholangitis back in 2001. PSC is an autoimmune disorder in which Jay's body attacks his liver, causing a buildup of scar tissue in the bile ducts. The scar tissue impedes the free flow of bile through the liver. Walter Peyton had PSC, although the ultimate cause of his death was cholangiocarcinoma, a type of cancer that occurs in patients with PSC. Jay's doctor used an ERCP to make the diagnosis. A bit of research showed that there was no known "cure" for the disease, but that there were some steps to slow its progression. The cure, in fact, is a liver transplant, but the time from diagnosis to a transplant varies from person to person. Jay's doctor at the time offered regular testing that would help us "stage" the disease.

When we moved to Jackson, Jay found a new doctor who suggested a colonoscopy. One of the risks of PSC is colon cancer, and many people with PSC also have some form of irritable bowel syndrome. The doctor wasn't happy with the state of Jay's colon and put him on a drug that has been shown to reduce the possibility of colon cancer. Roughly six weeks later I came home and noticed that the whites of Jay's eyes were actually yellow. My heart skipped a beat. Itching and jaundice indicate a buildup of bilirubin, which the liver is supposed to process into bile and excrete. The next day Jay called his doctor who told him to come in immediatley for labwork. His bilirubin level was 18 mg/dl. Normal is .20 mg/dl to 1.5 mg/dl. The doctor scheduled another ERCP right away.

The first time Jay had an ERCP, the surgeon placed a stent in his common bile duct to improve bile flow through the liver. The common bile duct leads from the liver to the small intestine. This time, the stent had fallen out, and the common bile duct was so strictured that the contrast dye wouldn't even go through. It kept siphoning off into the gall bladder. There was no way to even see what was happening inside the liver because they couldn't get there. After the procedure, the doctor used the word we had expected: Transplant.

It took four weeks, but Jay finally got an appointment with a specialist at Vanderbilt, and today was the day. The doctor looked at the films from the most recent ERCP and Jay's most recent round of bloodwork from late last week. He pointed out something that neither of us had considered: Jay's liver is actually still functioning in many ways. We've always looked at the numbers that are out of normal range without paying much attention to the numbers that are within normal range. So his liver's not great, but it's not failing completely.

The Vanderbilt doctor wants his own surgeon to do another ERCP. The surgeon has already looked at the films and thinks he might be able to open the common bile duct enough to get a stent in it, which will help the flow of bile and thus return Jay to a normal color. Being yellow is the least of his worries, but it really does make him look sick--probably sicker than he actually is. There's actually no immediate danger in the buildup of bile, but if left unchecked for a long time, it can become infectious and cause scarring of the actual liver tissue. They'll also do a CT scan to see what they can see. He'll follow up with the doctor a few times each year to see if things are progressing, and he'll get the joy of increased colon cancer vigilance - a yearly colonoscopy.

Not once did the doctor mention a transplant. He's going to look at the bloodwork done today to see if Jay's occasional fatigue is related to his illness or if there's something else going on. Of course, there are still the possibilities of colon cancer and cholangiocarcinoma (liver cancer), but since the doctor is going to follow Jay so closely, there's no reason to think that either of those things would progress too far before being caught. Big can of worms we're not even going to look at right now.

So, things aren't nearly as bad as we thought. Jay gets to keep his liver for now, there's hope that his color will return to normal after the next ERCP in a few weeks, and he's got a great doctor who is pretty clear about how to best manage the disease.

Your continued thoughts and prayers are appreciated. It's hard to remember when Jay is his normal pasty self and his energy is high (both of which will hopefully happen soon) that he has a chronic illness, but it lingers still and remains a source of concern for both of us. Prayers and thoughts of healing, hope, and courage to live boldly are always welcome.